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Notes from Year One

The first year of living with my parents has been challenging, transforming, shaming, hella frustrating, and yet somehow fantastic too. The best of times; the worst of times. It's not at all what I expected it would be, and I can already see the error of my assumptions.

I bought this house assuming that my dad would live maybe two more years, and my mother would live maybe ten. My intention was to keep them both at this house for as long as I possibly could. Completely in love with the property itself, I planned to finish out my life here as well. One year later, I recognize all that is wrong with those assumptions.

Dementia aside, my father gets healthy reports from his doctor and his demise seems slower than expected, even with the move. I had feared it would make him worse, and it did indeed disrupt him. He can't learn anything at the new house. He'll never understand that I live here. He'll never know where the trash goes, or how to tell if the dishwasher has been run. He doesn't know that I feed the dogs, and he's always confused why one dog brings him her toy every day. He'll never understand why he doesn't have car keys, or where to sit for dinner. And a million other things.

My mother, on the other hand, is in crisis. While her mind is strong, the stress of caring for my dad wears her down, mentally, physically, emotionally. While she was seeing friends and family post-vaccination, activities have been tempered with breakthrough infections and hesitancy to socialize with the unvaccinated. My father doesn't remember that one of their best friends died, or that another has moved with family far away. When my mother has to explain her grief to him, he usually responds by being upset that no one told him, and she's back to dealing with his dementia rather than sorting through her grief.

Couples who have been together as long as they have usually die within a year of each other and sometimes as short as minutes, hours, days, weeks, or just months apart. With his slow decline and her heightened stress, this seems far more likely for them than it did a year ago. Understanding this one year ago likely wouldn't have changed my decision, but I do feel the need to brace for the impact of losing them both.

After a particularly hard day for my mother a few weeks ago, I had told her I was taking them to dinner, and she could pick the place. She said something along the lines of just wanting to curl up and die, and my dad chimed in that if she was dying, he was going too, because he wasn't staying here without her.

Dementia or not, I believe him. Should my mother leave this earth before he does, he will want to go too. She's what grounds him, his inspiration to even try to keep going. Without her, he just *wouldn't* anymore.

My wish for them used to be that they would die together in a fiery crash. It may seem macabre, but for them, it would have been ideal. If my mother went first, my father would have driven me crazy needing to care for someone. If my father went first, my mother wouldn't know how to pump her own gas. The fiery crash seemed the best for them and me.

Now, the fiery crash scenario seems almost romantic. Likely their exit from this earth will neither be so dramatic nor so simple. The much more likely scenario is that one will go, and the other will be bereft and follow.

And I will be left behind by both, trying to figure out what to do next and how to keep moving. It's not something I'm looking forward to experiencing.

At the same time, I know in realtime that this experience will be one that I'll forever be grateful for, one that I will respect myself for doing. That I am in the situation to be able to do this for my parents -- to afford the place, to have the work flexibility to be available for them, to attempt to alleviate the heartbreak of caring for someone with dementia -- I will never regret this. My parents did the best they could raising me, and I'm doing the best I can providing for them.

As happy as I am here, as much as I love this property and the hiking, planting, and pruning that keeps me sane and grounded, I'm beginning to see that I may not stay here when they are gone. The loss of them that lies ahead may require a change of scenery, a new chapter, something different. Perhaps something that can celebrate and pay tribute to their lives while honoring that mine is still happening, that much can still be experienced, that the end of them is not the end of me.

Maybe what I've learned most this past year is that this is just a moment, one that won't last. I might stay here and learn to farm sheep, grow horseradish, and keep bees. Or I might move to a favorite city -- Galway, Spokane, Bogota, Kalamazoo, or one that I have not yet discovered.

The only thing that I can commit to one year later is to stay open to all that is happening in this moment and to all that lies ahead. Staying open to both the pain and the possibility will inevitably lead me somewhere interesting. Trying to figure out when how or why seems foolish. If the pandemic taught us anything, it's that nothing is certain. One year after the move, I've learned to embrace that uncertainty and let it take me where it's going.

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